Its been forever since my surgery and now I suddenly have mucus! This is terrible! I'm having blood work done tomorrow anyway but I'll also have to call my GI tomorrow and let him know. I better not be out of remission. This sucks! I hope my recent weight loss isn't due to being sick again and that its really from being a little more active. LAME!
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Noooooooo! Not mucus! D:
- Thread starter Jennifer
- Start date
I'm sure our bodies like playing these little games just to mess with our minds!
I really hope that this isn't a flare, fingers crossed your bloods etc are ok. Are your bloods a good indicator for you in telling you if you have active disease, lets hope so and you can get a quick answer!
I really hope that this isn't a flare, fingers crossed your bloods etc are ok. Are your bloods a good indicator for you in telling you if you have active disease, lets hope so and you can get a quick answer!
Blood work has always been a good indicator for me. My last scope was in November of last year and everything was fine. While in remission I really only have scopes done every 3 years. I had a barium swallow last year as well around the same time and all was clear then too.
Hope you are still in remission, Crabby, and that this is just some sort of fluke.
Crohn's Mom
Moderator
Awe Crabby .. I hope it's not a flare!
I love seeing your 12 years remission in your signature! It must stay!
I hope you get your results soon !
hugs
xoxo
I love seeing your 12 years remission in your signature! It must stay!
I hope you get your results soon !
hugs
xoxo
I hate that! You'll feel great for however long, then that one little thing happens and it fills you with dread, and questions, and worry and stress. I'm sitting here, saying in my head, it's nothing it's nothing it's nothing, she'll stay in remission. So I hope I'm right! Let us know about your bloodwork! I hope everything is good and normal and the mucus is just... mucus. And it goes away.
I'll be thinking of you!
I'll be thinking of you!
Ha! I wish mucus was just mucus. Its a sign of inflammation. I'm hoping its very very minor and easily nipped in the bud. I've been feeling odd about saying that I'm still in remission in other posts. I guess I shouldn't be but its hard to not feel like a fraud.
Waiting is the pits! Hope you hear soon and all is well.
xJillx
Your Story Forum Monitor
HI crabby, i hope your tests come out fine and it's only a one time thing and you will soon get back to your normal self again.
Terriernut
Moderator
Crabby!!! Noooooo. You are NOT in a flare, you SHALT NOT FLARE.
I am hoping its nothing at all! And thats why the GI didnt call.
:hug:
I am hoping its nothing at all! And thats why the GI didnt call.
:hug:
Still can't get a hold of my GI. Tends to happen when they are the only GI in the area so he has a lot of patients. The mucus seems to be continuing although not as bad as when I first noticed it but none the less, its still there. Diarrhea has increased as well.
Nothing from GI yet. I still have mucus too. Sometimes a little but a couple times it seemed like a lot. I have my appointment with my GP today and he ran a full blood panel last time I was there and we're going to go over the results today. Its also to find out if I still need B12 shots each month. I'm also going to ask for a referral to an optometrist as some people keep telling me that I need glasses.
Terriernut
Moderator
I hope you only need glasses!!! :ylol:Nothing from GI yet. I still have mucus too. Sometimes a little but a couple times it seemed like a lot. I have my appointment with my GP today and he ran a full blood panel last time I was there and we're going to go over the results today. Its also to find out if I still need B12 shots each month. I'm also going to ask for a referral to an optometrist as some people keep telling me that I need glasses.
And that all the tests are negative for anything wrong!
I'm back from my appointment. My inflammation markers have gone up. They were at 8 last time they were checked but are now at 25. There's obviously something going on. My GI is out of the country so that's why I didn't get a call back (would have been nice for someone to tell me sooner). He'll be back on the 15th this month and either him or a nurse will call me back. I the meantime my GP wrote a referral for another GI cause he thinks its bullshit I haven't heard back from my GI. Finding someone new may take some time.
Also, I may or may not need glasses but Cen-Cal doesn't pay for eye exams so that will have to be out of pocket and will have to wait.
Also, I apparently have asthma so he wrote me a script for an inhaler.
I'm also low on Iron and need to start taking 325mg/day. It's low and close to anemia. This has happened to me before.
I'm also losing my hair but he doesn't know why so he's going to check my thyroid and do some more blood work.
Was a really weird doctors appointment where we just started talking about everything. He also wants to do the B12 every other month to see how I do. The blood work showed that the B12 was high but then we realized that that's because I had the blood work done the day after I got the B12 shot. Go figure.
I've been having abdominal pain on my left side and above my bellybutton. I NEED A MED CHECK. I wish my GI would come back and try to fix this business or at least send me over to another GI who fills in for him.
Also, I may or may not need glasses but Cen-Cal doesn't pay for eye exams so that will have to be out of pocket and will have to wait.
Also, I apparently have asthma so he wrote me a script for an inhaler.
I'm also low on Iron and need to start taking 325mg/day. It's low and close to anemia. This has happened to me before.
I'm also losing my hair but he doesn't know why so he's going to check my thyroid and do some more blood work.
Was a really weird doctors appointment where we just started talking about everything. He also wants to do the B12 every other month to see how I do. The blood work showed that the B12 was high but then we realized that that's because I had the blood work done the day after I got the B12 shot. Go figure.
I've been having abdominal pain on my left side and above my bellybutton. I NEED A MED CHECK. I wish my GI would come back and try to fix this business or at least send me over to another GI who fills in for him.
I hope you get some answers soon!!! Absolutely hate waiting for test results! And, hope it's something that can be taken care of quickly!
As far as the hair loss, I started noticing my hair was thinning and had lots falling out in the shower, etc. When I mentioned it to my doctor, she tested my iron levels and found them quite low. Low iron can cause hair loss (temporary!) Once I started taking iron supplements, I noticed significantly less hair loss fairly quickly. Haven't really noticed 'thickening' of my hair yet, but I guess new, thicker hair will gradually grow in. I've also read a number of posts mentioned biotin to strengthen hair but I've never tried it.
Wishing for the best possible results for you from your tests!
As far as the hair loss, I started noticing my hair was thinning and had lots falling out in the shower, etc. When I mentioned it to my doctor, she tested my iron levels and found them quite low. Low iron can cause hair loss (temporary!) Once I started taking iron supplements, I noticed significantly less hair loss fairly quickly. Haven't really noticed 'thickening' of my hair yet, but I guess new, thicker hair will gradually grow in. I've also read a number of posts mentioned biotin to strengthen hair but I've never tried it.
Wishing for the best possible results for you from your tests!
Thanks Tess. Same thing happens with my hair. Didn't really seem significant but always lost a good amount in the shower and in my hair brush. I used to take iron as a kid but since I've been well my hair has been fine. It's never been thick, always fine but the thinning seems to only happen when I'm to doing so well. Hopefully it is the iron and that it'll fix itself.
This is my rant for the evening.
I was feeling pretty crappy to find that things only seem to be getting worse with my Crohn's and that my GI is out of town but then I tell my mom about it and her reply is, "did you drink too much alcohol?" Sure I I'm dealing with depression and drank over the weekend with my sister but these symptoms started before then and she knows that. Then I bring up the anemia and she tells me to get my iron filled in a prescription so I don't have to pay for it but my mom didn't seem to have the time to hear about how my insurance only pays for 6 prescriptions each month and if I have to take more meds for Crohn's then I'm going to have to cut out my Ambian, Lomotil and Klonopin for anxiety and if need be even my antidepressant. I'm getting close to only being able to have scripts that help me stay alive but not meds that make my quality of life better. Then everyone likes to put in their two cents about how I should quit smoking to help the asthma. Of course I'm going to quit. It doesn't help my heart condition anyway. I was only doing it cause I was depressed and still am but I gotta do what I gotta do so this is my last pack and I've only got a few left (plus I've only been smoking off and on for a couple weeks). I'm just trying to enjoy myself ever so slightly before I feel absolutely miserable and can't do anything about it. Then people like to tell me what I should eat to help the iron and Crohn's as if I have no idea. How about a little support or sympathy or caring in the slightest? Its like I've been sick so much in the past that people could really give a crap now days. I've already had surgery once and chances are I'll have to again yet no one seems concerned but me. All I get to hear from my family members is why I don't make art work anymore. I've been too depressed for any of that shit. There's no motivation. My mom even said that that's when the best art is made when you feel like crap. When I make art then it looks like crap and I scribble it out. No one gets to see it because its crap and isn't the type of work I want to be remembered for. Why does no one understand? I was always such a mama's girl but it seems like my mom isn't there for me anymore.
I was feeling pretty crappy to find that things only seem to be getting worse with my Crohn's and that my GI is out of town but then I tell my mom about it and her reply is, "did you drink too much alcohol?" Sure I I'm dealing with depression and drank over the weekend with my sister but these symptoms started before then and she knows that. Then I bring up the anemia and she tells me to get my iron filled in a prescription so I don't have to pay for it but my mom didn't seem to have the time to hear about how my insurance only pays for 6 prescriptions each month and if I have to take more meds for Crohn's then I'm going to have to cut out my Ambian, Lomotil and Klonopin for anxiety and if need be even my antidepressant. I'm getting close to only being able to have scripts that help me stay alive but not meds that make my quality of life better. Then everyone likes to put in their two cents about how I should quit smoking to help the asthma. Of course I'm going to quit. It doesn't help my heart condition anyway. I was only doing it cause I was depressed and still am but I gotta do what I gotta do so this is my last pack and I've only got a few left (plus I've only been smoking off and on for a couple weeks). I'm just trying to enjoy myself ever so slightly before I feel absolutely miserable and can't do anything about it. Then people like to tell me what I should eat to help the iron and Crohn's as if I have no idea. How about a little support or sympathy or caring in the slightest? Its like I've been sick so much in the past that people could really give a crap now days. I've already had surgery once and chances are I'll have to again yet no one seems concerned but me. All I get to hear from my family members is why I don't make art work anymore. I've been too depressed for any of that shit. There's no motivation. My mom even said that that's when the best art is made when you feel like crap. When I make art then it looks like crap and I scribble it out. No one gets to see it because its crap and isn't the type of work I want to be remembered for. Why does no one understand? I was always such a mama's girl but it seems like my mom isn't there for me anymore.
Terriernut
Moderator
They dont get it if they havent been through it Crabby. I'm glad you can come on here and let off some steam, because yeah, we get it!
But, if you are flaring again, you need to keep on those antidepressants. You know as well as anyone that stress and depression are going to give you more trouble for Crohns. I am surprised your Dr didnt give you some pred. I know, I know, it's horrible. But it IS cheap and it IS effective. And I know you need both right now.
Wish I could give you a hug right now lovely lady.
But, if you are flaring again, you need to keep on those antidepressants. You know as well as anyone that stress and depression are going to give you more trouble for Crohns. I am surprised your Dr didnt give you some pred. I know, I know, it's horrible. But it IS cheap and it IS effective. And I know you need both right now.
Wish I could give you a hug right now lovely lady.
xJillx
Your Story Forum Monitor
Oh, Crabby, I am so upset that things are stirring up. You only recently posted your success story. I sure hope you can get this thing nipped in the bud quickly. Any game plan in mind?
And I know how you feel about no one understanding. After only having this diagnosis for a year, people don't want to hear about it anymore. My friends ask how I am, but move on with the conversation soon after. But, on the other hand, I have my mom that each day is telling me about new diets or supplements to try. Sometimes you just want people to truly listen, offer support, and not to minimize what you are going through. Hence, why I love the forum! It's always here on a bad day.
I sure hope things get sorted out soon, and you start to feel better.
And I know how you feel about no one understanding. After only having this diagnosis for a year, people don't want to hear about it anymore. My friends ask how I am, but move on with the conversation soon after. But, on the other hand, I have my mom that each day is telling me about new diets or supplements to try. Sometimes you just want people to truly listen, offer support, and not to minimize what you are going through. Hence, why I love the forum! It's always here on a bad day.
I sure hope things get sorted out soon, and you start to feel better.
I'm so sorry that nobody seems to understand. I think that we all go through that with these crappy (no pun intended) diseases. It's especially hard when you're feeling well and trying to do the right thing for your body then you get another flare anyway. On a brighter note, I had the same prescription for iron (325mg) and it was only about $7.00 at Rite Aid without insurance. You might want to check Walmart if you're close to one. Their prescriptions are really inexpensive. I hope that your doctor can help stop the flare before it gets any worse. Hang in there and know that everyone here is pulling for you.
I just went to Rite Aid and didn't see any that were 325mg. The highest was 65mg and I'd have to take 5 of them. I'll see about Walmart. I'd hate to have a wasted prescription just for Iron tabs.
There's no game plan yet Jill. So far I'm waiting for a reply from either my GI or a new GI.
There's no game plan yet Jill. So far I'm waiting for a reply from either my GI or a new GI.
Sorry if my message was confusing. The 325mg was a prescription, not over-the-counter. The prescription itself was only around $7.00, so it was actually cheaper than my copay. I found information online never to take 325mg of over-the-counter iron because you can overdose. The prescription, even though it says 325 mg. is equivalent to less over-the-counter iron. Go figure - it's really dangerous, so don't try to take 5 of those tablets. Google it online and it will explain the difference. I'm not trying to give you medical advice, as I'm not a doctor, but I don't want you to harm your body by accident.
Online its talking about a difference between ferrous sulfate and iron but how are they different when ferrous sulfate is the scientific name of iron? So confusing. I'll have to ask my pharmacist cause my GP is only there on Tuesdays now that I remember.
Regarding the Iron - Fe:
All iron (Fe) needs to be bound to something in order for it to be absorbed by the body. Ferrous Sulphate (FeSO4) is and oxidised form of iron, that can be absorbed.
325mg of ferrous sulphate is equivalent to about 65mg of elemental (pure) iron. The cheapest form of iron used as a supplement is Ferrous Sulphate.
There are better absorbed forms of Iron such as Iron Glycinate, or Ferrous fumarate which don't irritate the guts as much.
Yes, it is confusing.
All iron (Fe) needs to be bound to something in order for it to be absorbed by the body. Ferrous Sulphate (FeSO4) is and oxidised form of iron, that can be absorbed.
325mg of ferrous sulphate is equivalent to about 65mg of elemental (pure) iron. The cheapest form of iron used as a supplement is Ferrous Sulphate.
There are better absorbed forms of Iron such as Iron Glycinate, or Ferrous fumarate which don't irritate the guts as much.
Yes, it is confusing.
- Location
- London, UK
I'm so sorry to hear you're having problems Crabby, and the delay in getting seen by your GI. Really hope you can get things sorted nice and quickly, I'd hate for you to have to change the awesome last line of your sig! Crossing my fingers for you .
Crossing my fingers for you .Well it's official. I'm in a flare now. Got a call back from my GI and they are upping my 6MP from 50mg to 75mg (same dose I took before my surgery) and are starting me back up on Prednisone at 40mg for a week then go down to 30mg and so on to see if that helps any. He also wants to see me in 2-3 weeks but his office needs authorization from my GP for some reason (probably my insurance company is being dumb as usual). So I'm waiting for a call back from the woman who does referrals so I can make my appointment with my GI.
Honestly I'm feeling a little emotional and scared even though I've been through all this before. Its just been a while I guess. I had a good run though for 12 years. Hope everyone else is able to do the same some day soon but preferably longer.
Honestly I'm feeling a little emotional and scared even though I've been through all this before. Its just been a while I guess. I had a good run though for 12 years. Hope everyone else is able to do the same some day soon but preferably longer.
- Location
- London, UK
Oh Crabby I'm sorry you're flaring! The treatment plan sounds like a good one though, hopefully the Pred will nip this in the bud and give the 6MP time to do it's thing and give you another great 12 years (or 60!). Hope there's no delay on you starting your meds and that this is a very brief bump in the road, you don't need the appointment with your GI before you can get the prescriptions do you? Good luck with everything.
No he already faxed the prescriptions. They're trying for Entocort instead of Prednisone but if my insurance wont pay for it then I'll have to go on Pred. I'm waiting for a call back from the pharmacy. Still waiting for a call from the referral place too so I can make the appointment with my GI.
I'm waiting for a call back from the pharmacy. Still waiting for a call from the referral place too so I can make the appointment with my GI.Ok so I can pick up the generic form of Entocort tomorrow (yay no Pred!) and I got a call back from the referral office and they are faxing it to my GI tonight and I can call the GI office tomorrow morning to make my appointment since their office is now closed (got the call back a half our too late, oh well). At least things seem to be getting taken care of in an orderly and fairly timely fashion now.
Terriernut
Moderator
Damnation Crabby! I am truly sorry you are flaring.
But 12 years is a good run. And I hope this is swiftly brought under control (sounds like it will be) and you are back to typing about your remission.
:hug:
But 12 years is a good run. And I hope this is swiftly brought under control (sounds like it will be) and you are back to typing about your remission.
:hug:
DustyKat
Super Moderator
Oh man Crabby...
I am so, so sorry to hear this. It's good to hear though that you have been able to jump on it quick. I so hope you can knock it on the head ASAP and get back into remission for even longer time!
Gotta admit, have a vested interest in this...I tend to look at your journey and think of Sarah!
Good luck mate, :heart:
Dusty. xxxxxxxx
I am so, so sorry to hear this. It's good to hear though that you have been able to jump on it quick. I so hope you can knock it on the head ASAP and get back into remission for even longer time!
Gotta admit, have a vested interest in this...I tend to look at your journey and think of Sarah!
Good luck mate, :heart:
Dusty. xxxxxxxx
Sorry I missed all of this Crabs!! I was hoping as I read through it all that it'd have a happier conclusion! I'm glad you are getting to try Entocort instead of pred. Will follow more closely now. Hope this is the beginning of a happy conclusion to this flare!!
xJillx
Your Story Forum Monitor
I am so upset to read this! Let's hope that since you were so proactive, this flare can be nipped in the bud quickly with your upped 6MP and Entocort.
I didn't know there was a generic form of Entocort. This is good to know. I have heard the brand name is very expensive.
I hope you start feeling better soon, Crabby.
:getwell:
I didn't know there was a generic form of Entocort. This is good to know. I have heard the brand name is very expensive.
I hope you start feeling better soon, Crabby.
:getwell:
I can understand where you are coming from. I enjoyed about 10 years of remission before my current flare, and it's pretty tough to deal with some days knowing how good it feels to be in remission (I miss eating normal food!).Honestly I'm feeling a little emotional and scared even though I've been through all this before. Its just been a while I guess. I had a good run though for 12 years. Hope everyone else is able to do the same some day soon but preferably longer.
I hope the current treatment plan does the trick and this is just a bump in the road. It sounds like you caught it in the very early stages. All the best!
Crohn's Mom
Moderator
Crabby, I don't know how I missed all of this, sorry!
I'm so sorry to hear your not in remission any longer; that must be so tough.
Fingers and toes crossed that the change in meds puts it to a halt very, very quickly!!
Thinking about you!
hugs,
~T~
I'm so sorry to hear your not in remission any longer; that must be so tough.
Fingers and toes crossed that the change in meds puts it to a halt very, very quickly!!
Thinking about you!
hugs,
~T~
I'm picking up the Entocort soon (today). Will also make my GI appointment today after their 2 hour lunch. Got a call from our apartment manager saying we needed to move and wash our car cause there's going to be an inspection this weekend. Stupid thing took 2 hours to do cause it doesn't run. Wish I had called the GI office first instead of worrying about something so stupid. Oh well. I can call in less than 2 hours from now at least.
Thank you all for your well wishes. Its gonna be hard to not eat whatever I want anymore.
Thank you all for your well wishes. Its gonna be hard to not eat whatever I want anymore.
Cat-a-Tonic
Super Moderator
Crabby, just saw this thread - so sorry to hear you're flaring! I've only been hovering around remission for a little while and you've been one of my remission role models. Like Dusty said, there's some vested interest. I am in awe that you were in remission for so long, and I'm sorry it had to end. I hope you can get back in remission soon! If it makes you feel any better, Entocort was what did it for me, so I hope it works really well for you too. Take care and feel better soon!
I hope it does soon. I was taking it and Pred before my surgery so its not a new drug for me but it also didn't get a chance to work for me back then cause I was just too messed up inside. Been a while since I've taken it so I'll have to look up the side effects again but I know they weren't anything like Pred.
Cat-a-Tonic
Super Moderator
If I recall correctly, the common side effects of Entocort are pretty basic stuff like nausea and headaches. Entocort definitely doesn't make you manic or stay up all night or anything like pred does. I had maybe a little extra energy but could still fall asleep at night when I was on it.
I really hope this flare settles quickly for you. The good thing is you recognised the signs early so hopefully you have caught it before it has caused too much of a problem.
All digits and limbs crossed for you in sunny England !
)
All digits and limbs crossed for you in sunny England !
)I'm still having some mucus and things are seeming green but that may be from the iron I'm taking now. Stool seems to be more formed which is good but still have some loose stool. I have an appointment with my GI on the 30th of this month to check and see how the meds are working and to see if he wants to run any tests. I'm also going to have blood work done before the appointment as well.
Cat-a-Tonic
Super Moderator
Crabby, just a thought, have you eaten any spinach lately? My poo turns dark when I take iron, but it turns green when I eat spinach. Either way, whether it's spinach or iron turning your poo funky colors, at least it's not blood, right? Sounds like things are slowly getting better, I hope you continue to improve! Good luck with the blood tests and the GI appointment.
xJillx
Your Story Forum Monitor
Damned that mucus. I myself can never seem to escape it for long.
I hope you get a good report on the 30th. Any ideas of what tests your GI may order other than blood work?
The usual tests would be a scope (probably lower cause he thinks it may be from my colon region based on where the pain is I was having off and on (left side isn't usual for me) and probably a barium swallow. We'll see. Both tests were last done almost a year ago in October.
Terriernut
Moderator
I'm hoping and wishing and lighting candles that you are getting everything done and knocking it on its bloomin head!
We love ya Crabby!!! xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
We love ya Crabby!!! xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Results for what? I'm having more blood work done this week which will be sent to the GI and I'm seeing him on the 30th this month. The mucus is still there but not often and seems less but I'm also starting to go to the bathroom more often even though it seemed like things became fully formed after I started the Entocort and upped the 6MP. Its hard to tell if the meds are doing anything cause they always seem to work right off the bat but can stop working pretty quickly as well. I'll update when I know more.
just seeing this.. you okay now?
Aww im sorry
. I hateee mucous!Me too. I've been having random sharp pains all over the place too. Sometimes above or right below the bellybutton or the LHQ or RHQ. Just everywhere. None have lasted for more than 20 seconds at a time but I don't remember having pain in random locations with my last flares. Was usually just the LRQ.
Thats bizarre! My pains have been moving too! Constant on the LRQ but 'jabs' URQ too! Wonder what it means.
My guess is increased gas for some unknown reason to me and also inflammation causing some oh so slight narrowing in some areas making things have to force their way through. I've learned a lot on this site and one of the most recent things is that Crohn's can affect your bowel in patches. So it would make sense for it to still hurt in my LRQ which I believe is where the TI is/was located (for me) but since I had a resection its common for it to affect the old resected bowel and possibly getting into my colon and higher up the ileum (just based off of where the pain is, LHQ usually means colon and RHQ is the TI and ileum).
Terriernut
Moderator
Crabby, I too had shooting pains that seemed to move all over. You arent alone. But I am so sorry you are flaring again. But honey, you are an inspiration to all of us no matter what! 12 years is great, you did it!! And you can do it again.
I hope so. I'm sick of this flare already and its not even as bad as my old ones. My doctors only ask me if I'm bleeding. Dude, I don't want to wait till I'm that bad. I'm having my blood work done today so hopefully my GI will have the results next Tuesday during my appointment.
I'm having my blood work done today so hopefully my GI will have the results next Tuesday during my appointment.
Terriernut
Moderator
Do what I forget to do...write everything down as it happens and then slap the diary down in their face. Bleeding is hardly the only problem we have FFS! Twits.
Sorry, I think I am CRABBY today!!! :ylol2:
Sorry, I think I am CRABBY today!!! :ylol2:
Be glad you're not as stubborn as me. I went 6 weeks before getting treatment (started Pred yesterday! ) and had bleeding off and on all along. I waited until the vomiting started
) and had bleeding off and on all along. I waited until the vomiting started I've been through all those tests and would prefer to avoid a few ever again or certain medications so there's NO WAY I'm waiting till some bleeding starts. So far I'm glad I got to go on Entocort first before having to try Pred again. The GI said Pred and I suggested Entocort. He said he didn't think my insurance would pay for it but what do you know? It does! Glad we had a talk about it rather than him assuming what my insurance does and doesn't pay for.
@ Terriernut - I'll do that. I was just wondering to myself when the last time was that I saw some mucus and made a mental note but I'm sure an actual note would help a lot. Been a while since I had to go through this business.
So far I'm glad I got to go on Entocort first before having to try Pred again. The GI said Pred and I suggested Entocort. He said he didn't think my insurance would pay for it but what do you know? It does! Glad we had a talk about it rather than him assuming what my insurance does and doesn't pay for. @ Terriernut - I'll do that. I was just wondering to myself when the last time was that I saw some mucus and made a mental note but I'm sure an actual note would help a lot.
Been a while since I had to go through this business.Ive never been on Enticort. Afraid to ask for it too because of no diagnosis - just running off a self-diagnosis by family doc. She gives me what works. And not sure it would be covered. The heavy duty treatment like humira and remicade arent covered by healthcare up here, i'd assume all official IBD treatment options arent.
Terriernut
Moderator
Oh Crabby! Fingers crossed they get you sorted ASAP!!!
Gd dmn Crohns! :ymad:
Gd dmn Crohns! :ymad:
WELL FALSE ALARM!
So went to the GI today and he does not think I'm in a flare. What he told me is that since I've already had a resection chances are I'm collecting a lot of bacteria in my gut at the resection site (due to pockets or abnormalities caused by the surgery) making it so I'm not digesting properly which is causing mucus and showing slight inflammation. Apparently my GP read my blood work wrong. He said my inflammation markers went from an 8 to 25 when really it went from an 8 to a 9.3. Really not that much of an increase over the course of a year.
He wants me to stay on Entocort and the 75mg of 6MP to see how I do (he said both can be used as maintenance drugs) and to start taking probiotics (Acidophilus) to increase the amount of good bacteria in my gut in hopes that they'll fight off the bad bacteria. It was either that or antibiotics but that'll kill the good bacteria too.
He said that this may become common since my resection and that it doesn't mean I'm in any type of flare. So good news really.
So still in remission for 12 years and counting baby!
So went to the GI today and he does not think I'm in a flare. What he told me is that since I've already had a resection chances are I'm collecting a lot of bacteria in my gut at the resection site (due to pockets or abnormalities caused by the surgery) making it so I'm not digesting properly which is causing mucus and showing slight inflammation. Apparently my GP read my blood work wrong. He said my inflammation markers went from an 8 to 25 when really it went from an 8 to a 9.3. Really not that much of an increase over the course of a year.
He wants me to stay on Entocort and the 75mg of 6MP to see how I do (he said both can be used as maintenance drugs) and to start taking probiotics (Acidophilus) to increase the amount of good bacteria in my gut in hopes that they'll fight off the bad bacteria. It was either that or antibiotics but that'll kill the good bacteria too.
He said that this may become common since my resection and that it doesn't mean I'm in any type of flare. So good news really.
So still in remission for 12 years and counting baby!
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Terriernut
Moderator
Whoooohoooooooooooo!!!! Kill those nasty bacteria buggers off!
So glad you are not flaring!!!
:dance:
So glad you are not flaring!!!
:dance:
yayyyy for false alarm!!
Fantastic news!! Long may it continue. )
How can you miss read a number though!!??
)How can you miss read a number though!!??
I'm wondering how long its supposed to take for Acidophilus to take effect and actually do something. I still have mucus and I'm wondering if I'm being treated properly by my GI. He does spend a lot of time with me and answers all my questions while I'm there but I can't help but wonder if there is something going on that needs to be addressed that he's either ignoring or not seeing. Should I still try for a referral to another GI? My GP said he was going to get me one but that was over a month ago and I haven't heard anything about it since. I've never read anywhere that undigested food and drink can cause mucus and that's one of my GI doctor's explanations for the mucus along with an overgrowth of bad bacteria caused by me resection. Even that explanation sounds like a reach. :/
Why don't you contact your gp and ask about the referral. Even if a second opinion is just to stop you worrying it will be worth it. I think you know your body best and if you are worried then get it rechecked.
If your inflammatory markers always go up in a flare then it probably isn't a flare.. but things have changed and thats always worth checking out.
If your inflammatory markers always go up in a flare then it probably isn't a flare.. but things have changed and thats always worth checking out.
Terriernut
Moderator
Personally, I too would chase the GP for a recommendation to another GI Crabby. Mucus isnt something that just shows up. And no, I dont think normal people get that much mucus from a bacterial problem that acidophilus will sort.
How are you feeling?
How are you feeling?
I feel fine for the most part. Having diarrhea does drain me a bit so I am more tired than usual but I'm not in any pain yet do have mild discomfort every now and then. I just don't understand why my GI would keep me on Entocort if I'm not in a flare like what's the point? To me he kind of seems like one of those GI docs that just tells you to watch what you eat and lose weight and suddenly all your problems will go away. I think I might try to contact my first GI from when I was a kid and see what he thinks cause he was the best GI I ever had and he knows my body more than anyone (probably even more than me lol). Just called the hospital that my old GI works at and apparently they don't have personal voice mail boxes anymore and I have to call tomorrow morning. Oh well, hope I get in touch with him some day soon (he works at another office on certain days but I forget which). I'll try contacting my GP tomorrow too to check the status of the referral.
xJillx
Your Story Forum Monitor
I would get a second opinion if I were you. If nothing else, it will give you peace of mind. But I agree, his reasoning for the mucus seems weak. Also, I agree with your questioning of him keeping you on Entocort if he is positive you aren't flaring. Things aren't adding up.